Elm and Valencia

Elm is a First Nations child with ‘severe intellectual disability’. When her mother died, child protection services placed her in the care of her grandmother, Valencia.

‘When we picked her up as a baby, she was very tiny,’ Valencia told the Royal Commission. ‘I said to them what does she need and any special needs? They said, no, no, just treat her like a normal baby. Well, it became evident pretty quickly that that was not the case.’

Elm has ‘a complex medical history’.

‘She’s got medical epilepsy, dysphasia, which is a difficulty swallowing … She's getting speech therapy … She had special boots because her core muscles are very poor and her coordination is very poor’.

Currently Elm goes to primary school and is ‘really struggling big time’.

‘At the moment she's in a year 4 class and she’s doing grade 1 work. She can write her name and she can write a few other words, but not many. Her maths is at a pre-primary level and she's supposed to sit in a year 4 classroom and function. But she still doesn't qualify for any education department support.’

The education department refuses to accept Elm’s level of intellectual disability. Even though she is on the NDIS with that diagnosis, ‘it has to be approved by a senior school psych’.

Instead, the department used its own testing criteria for children ‘from First Nations backgrounds’. Because it showed her ‘as higher … in a borderline diagnostic range’, the government denied her funding and support.

‘It's designed to be supportive and to be anti-racist, but it actually works against her,’ a lawyer for the family told the Royal Commission.

The school is doing ‘the best that they possibly can’ for Elm, ‘without any support whatsoever’ from the government, Valencia said.

‘But they still don't have the resources that they need to adequately provide what she needs. And we want [Elm] in the mainstream environment because we do feel that that's the best for her.’

Elm needs ‘sensory breaks’ and one-on-one support ‘to do physical things’, but there is not enough staff. The education department plans to reassess Elm at the end of 2023.

‘But why do we have to wait over a year when everyone already knows she needs help?’ Valencia said.

‘They say that by then she will have fallen so far behind that it will be obvious to them. But in the meantime, she's got to fail for the rest of this year, all of next year, fail.’

She is ‘hugely concerned’ about what happens for high school.

‘She will be so far behind even if she does get the support.’

Meantime, she wanted Elm tested for fetal alcohol spectrum disorder (FASD), but the department of child protection ‘refused to allow it’. She wonders whether it’s a costs issue.

‘Or does it highlight their failure that they should have done it at the start.’

She’s ‘reluctant to challenge them too much’ from fear they will take Elm away. But she is determined to fight the ‘systemic issues that continue to fail these children’.

Because of her developmental problems, Elm is increasingly isolated.

‘Other kids don't invite her to the birthday parties … they're interested in mobile phones and boyfriends. She is still into Bluey.’

Valencia said ‘it’s just not fair’ when the government say ‘she's getting more help than anybody else’.

‘She deserves all the help they can give her 'coz it wasn't her fault … We want her to be the best person she can be.’